The Cure Dystonia Initiative


Cure Dystonia Initiative

A New Approach to Accelerating Treatments

The Dystonia Medical Research Foundation (DMRF) launched the Cure Dystonia Initiative (CDI) in May of 2006 to accelerate the development of more effective treatments for dystonia with the ultimate goal of finding a cure. Although remarkable progress has been made in unraveling the causes and mechanisms of the dystonias, the availability of effective treatments remains limited. It has become increasingly clear that a new initiative by the dystonia community is needed.

The DMRF has eagerly embraced this challenge. In establishing the CDI as a not-for-profit program of the Foundation, we provide the strategic direction, resources, and business infrastructure to enter this new research phase.

Before embarking upon this venture, the DMRF carefully researched the practices of other disease groups that have launched similar initiatives. We are learning from those that are blazing the trail and thus taking advantage of the experience they have gained. Armed with a sense of urgency and passion, many advocacy groups have made the strategic decision to fill the leadership void that exists in discovering cures for small diseases. To do so, these groups have essentially adopted a business approach to the development of therapies. Their first step was to enlist the help of individuals from the bio-pharmaceutical industry who possess the specialized talents and expertise to help plan and oversee therapeutic initiatives. In forming the CDI, we, too, have recruited the necessary professional experience, and we are modeling our efforts on the best practices within the newly emerging world of profit/non-profit partnerships."


"Support global collaboration in dystonia research through regular communications with U.S, European, Asian and other dystonia groups and researchers."

OK so now the question is, how is the Cure Dystonia Initiative going in YOUR country and has the initiative thoroughly explored the various therapies (and occasionally cures) referred to on this blog and many other sites?

1 comment:

  1. Stuart Pearson (carer)01 March, 2011

    I have looked through the UK website and cannot find any information on research except on physiotherapy and botox.